Hertfordshire and West Essex ICB
Integrated Care Board
Action Planned
The ICB acknowledges the need for integrated care for patients with Type 1 Diabetes and Disordered Eating. They plan to implement a care pathway for these patients once national guidance is available and are working to resolve funding challenges to extend data sharing across more care providers. (AI summary)
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Dear Ms McCormick Thank you for your Report to Prevent Future Deaths dated 15th July 2024 concerning the death of Megan Leanne Davison on 4th August 2017. In advance of responding to the specific concerns raised in your report, I would like to express my deep condolences to Megan’s family. Hertfordshire and West Essex Integrated Care Board (ICB) are keen to assure the family and the Coroner that the concerns raised about Megan’s care have been listened to and reflected upon. Within your report you have detailed three specific matters of concern, I have addressed each in turn below;
1. On a national level there is not a system which is capable of being operated in a way which will ensure proper integrated healthcare for patients with Type 1 Diabetes with Disordered Eating (T1DE). Specifically, there is no formal diagnosis for T1DE, no treatment pathway for T1DE and no complete treatment pathway for Diabetic Ketoacidosis. We note that your report has also been sent to the Secretary of State for Health due to the national matter of concern identified. I will therefore not respond further on this specific issue.
2. At a local level in East and North Hertfordshire there is no integrated healthcare system for patients with diabetes and eating disorder as there is in the west of the county. The ICB recognises the complex needs of patients such as Megan who have both type 1 diabetes and disordered eating (T1DE), and that these needs are best identified and managed through coordinated care and case management. The development of national advice on diagnosis and
, Chief Executive
, Chair management of T1DE (as per the above item) would help to strengthen improvement locally and more widely. The ICB commissions diabetes services and in East and North Hertfordshire and there is collaborative working between community and acute diabetic teams, with a history of shared clinical posts. In General Practice, the ICB has invested in improvements in diabetic care as well as enhanced physical health checks for people with mental health conditions. Investment has also been made into Talking Therapies for people with long term physical health conditions, including diabetes. The ICB has worked with local mental health providers to improve access and care for people with an eating disorder or disordered eating, with associated additional community service transformation funding. The ICB is working closely with NHS England’s regional mental health and transformation team, to learn from recent national pilots to trial pathways for T1DE patients and apply this within the Integrated Care System (ICS). The regional team have confirmed they are happy to work with the ICB to ensure any learning from the pilots, as well as relevant national guidance, can be incorporated into our local model. Locally, Mental Health commissioners lead an implementation group with membership from all ICB partners including primary care, community commissioning, regional teams, the voluntary sector, service users, and carers to support quality improvement and delivery of eating disorder services and physical health checks. This work will inform further pathway development and improve access to physical health services for people with serious mental health conditions. Across the ICS, complex patients requiring case management are now proactively identified and managed through local Integrated Neighbourhood Teams. These bring together professionals from across relevant services to understand the holistic needs of individuals and develop joint plans. Where necessary, the ICB (via its clinical teams) can help to organise case-based discussions. We are reinforcing the availability of this support and ensuring there is a clearer process for local providers to escalate cases to the ICB. If a patient is identified as needing joint input from diabetes and mental health services, the ICB can convene a case conference as appropriate, with the relevant teams to develop an agreed management plan. Details on how local providers can access this process will be in place by November 2024, enabling clinicians to make best use of this support. To address variation in service provision within different parts of the ICS, the ICB is working with local providers to develop a new, integrated model of diabetic care reflecting the needs of all diabetic patients. This includes the management of complex cases involving multi-disciplinary case management, including mental health support.
3. Whilst there have been significant advances in developing shared clinical records systems across primary and secondary care since Ms Davison's death in 2017, none of the shared records systems extends to organisations which are deemed to be private
, Chief Executive
, Chair providers, such as The Priory. You have heard evidence from the Chief Medical Officer of The Priory that record sharing which includes private providers would help to prevent future deaths. When considering shared clinical records there are two areas that we need to review; the technological aspect and then the data sharing arrangements that are in place. The model for all shared care records is that when an appropriate clinician or carer opens the patients record on their local electronic patient record, they then click on a shared care record, and it will display any data held for that patient. Within Hertfordshire and West Essex Integrated Care System our ambition is to give access to any appropriate person providing care. However, a phased approach to implementation is required to manage this safely as well as due to the significant costs involved. To provide access to the shared care record requires a connection to each care providers system which involves technical integration, information governance process and ongoing revenue funding for that connection. Within the current phase of work, the ICB now has a shared care record with a rich volume of data being shared from a number of organisations connected; this does include some private providers such as local hospices. Our future plan is to be able to extend the roll out to as many providers as possible including private providers and we do recognise the benefit this will bring in relation to patient safety. We are mindful that national funding for this work was reduced in 2023/24 and we are awaiting clarification regarding future funding for 2024/25 and beyond; this has meant that we have not yet been able to roll out further at this stage. Hertfordshire and West Essex ICB has made our views known on this point and we hope to progress with further implementation should further national funding be identified. In relation to data sharing agreements, the East of England Region uses “MyCareRecord” which enables health and care professionals to securely access patient information, across different organisations that are part of the MyCareRecord agreement. Currently Hertfordshire and West Essex ICB host MyCareRecord on behalf of the whole region. In a similar way to the shared care records described above, there are funding challenges that we are currently looking to resolve regionally. In order to extend this to more care providers, additional funding is needed to both connect up new providers and to safely and securely maintain the technology. In the meantime, we continue to work with local providers to ensure that patient information relating to their care is shared appropriately on a case-by-case basis. Additionally, the report to prevent future deaths will be shared with the local System Quality Group, and discussed, to ensure wider learning from Megan’s death and the valid matters of concern that you have identified.
Dr Jane Halpin, Chief Executive
Rt. Hon. Paul Burstow, Chair Thank you for bringing these important patient safety issues to my attention. I do hope my response provides some assurance to you and Megan’s family regarding the actions being taken in relation to the care provided to patients within east and north Hertfordshire with type 1 diabetes and disordered eating. Please do not hesitate to contact me should you require any further information or clarification.
1. On a national level there is not a system which is capable of being operated in a way which will ensure proper integrated healthcare for patients with Type 1 Diabetes with Disordered Eating (T1DE). Specifically, there is no formal diagnosis for T1DE, no treatment pathway for T1DE and no complete treatment pathway for Diabetic Ketoacidosis. We note that your report has also been sent to the Secretary of State for Health due to the national matter of concern identified. I will therefore not respond further on this specific issue.
2. At a local level in East and North Hertfordshire there is no integrated healthcare system for patients with diabetes and eating disorder as there is in the west of the county. The ICB recognises the complex needs of patients such as Megan who have both type 1 diabetes and disordered eating (T1DE), and that these needs are best identified and managed through coordinated care and case management. The development of national advice on diagnosis and
, Chief Executive
, Chair management of T1DE (as per the above item) would help to strengthen improvement locally and more widely. The ICB commissions diabetes services and in East and North Hertfordshire and there is collaborative working between community and acute diabetic teams, with a history of shared clinical posts. In General Practice, the ICB has invested in improvements in diabetic care as well as enhanced physical health checks for people with mental health conditions. Investment has also been made into Talking Therapies for people with long term physical health conditions, including diabetes. The ICB has worked with local mental health providers to improve access and care for people with an eating disorder or disordered eating, with associated additional community service transformation funding. The ICB is working closely with NHS England’s regional mental health and transformation team, to learn from recent national pilots to trial pathways for T1DE patients and apply this within the Integrated Care System (ICS). The regional team have confirmed they are happy to work with the ICB to ensure any learning from the pilots, as well as relevant national guidance, can be incorporated into our local model. Locally, Mental Health commissioners lead an implementation group with membership from all ICB partners including primary care, community commissioning, regional teams, the voluntary sector, service users, and carers to support quality improvement and delivery of eating disorder services and physical health checks. This work will inform further pathway development and improve access to physical health services for people with serious mental health conditions. Across the ICS, complex patients requiring case management are now proactively identified and managed through local Integrated Neighbourhood Teams. These bring together professionals from across relevant services to understand the holistic needs of individuals and develop joint plans. Where necessary, the ICB (via its clinical teams) can help to organise case-based discussions. We are reinforcing the availability of this support and ensuring there is a clearer process for local providers to escalate cases to the ICB. If a patient is identified as needing joint input from diabetes and mental health services, the ICB can convene a case conference as appropriate, with the relevant teams to develop an agreed management plan. Details on how local providers can access this process will be in place by November 2024, enabling clinicians to make best use of this support. To address variation in service provision within different parts of the ICS, the ICB is working with local providers to develop a new, integrated model of diabetic care reflecting the needs of all diabetic patients. This includes the management of complex cases involving multi-disciplinary case management, including mental health support.
3. Whilst there have been significant advances in developing shared clinical records systems across primary and secondary care since Ms Davison's death in 2017, none of the shared records systems extends to organisations which are deemed to be private
, Chief Executive
, Chair providers, such as The Priory. You have heard evidence from the Chief Medical Officer of The Priory that record sharing which includes private providers would help to prevent future deaths. When considering shared clinical records there are two areas that we need to review; the technological aspect and then the data sharing arrangements that are in place. The model for all shared care records is that when an appropriate clinician or carer opens the patients record on their local electronic patient record, they then click on a shared care record, and it will display any data held for that patient. Within Hertfordshire and West Essex Integrated Care System our ambition is to give access to any appropriate person providing care. However, a phased approach to implementation is required to manage this safely as well as due to the significant costs involved. To provide access to the shared care record requires a connection to each care providers system which involves technical integration, information governance process and ongoing revenue funding for that connection. Within the current phase of work, the ICB now has a shared care record with a rich volume of data being shared from a number of organisations connected; this does include some private providers such as local hospices. Our future plan is to be able to extend the roll out to as many providers as possible including private providers and we do recognise the benefit this will bring in relation to patient safety. We are mindful that national funding for this work was reduced in 2023/24 and we are awaiting clarification regarding future funding for 2024/25 and beyond; this has meant that we have not yet been able to roll out further at this stage. Hertfordshire and West Essex ICB has made our views known on this point and we hope to progress with further implementation should further national funding be identified. In relation to data sharing agreements, the East of England Region uses “MyCareRecord” which enables health and care professionals to securely access patient information, across different organisations that are part of the MyCareRecord agreement. Currently Hertfordshire and West Essex ICB host MyCareRecord on behalf of the whole region. In a similar way to the shared care records described above, there are funding challenges that we are currently looking to resolve regionally. In order to extend this to more care providers, additional funding is needed to both connect up new providers and to safely and securely maintain the technology. In the meantime, we continue to work with local providers to ensure that patient information relating to their care is shared appropriately on a case-by-case basis. Additionally, the report to prevent future deaths will be shared with the local System Quality Group, and discussed, to ensure wider learning from Megan’s death and the valid matters of concern that you have identified.
Dr Jane Halpin, Chief Executive
Rt. Hon. Paul Burstow, Chair Thank you for bringing these important patient safety issues to my attention. I do hope my response provides some assurance to you and Megan’s family regarding the actions being taken in relation to the care provided to patients within east and north Hertfordshire with type 1 diabetes and disordered eating. Please do not hesitate to contact me should you require any further information or clarification.